The most important thing you’re not discussing with your doctor

Politicians and policymakers are discussing what parts of the Affordable Care Act to change and what to keep. While most of us have little control over those discussions, there is one health care topic that we can control: what we talk about with our doctor.

The Institute of Medicine (IOM) released the landmark publication Crossing the Quality Chasm 15 years ago. The report proposed six aims for improvement in the U.S. health system, identifying that health care should be patient-centered, safe, effective, timely, efficient and equitable.

The idea that health care should be patient-centered sounds obvious, but what does that mean? The IOM defines it as care that is “respectful of and responsive to individual patient preferences, needs, and values” and that ensures “patient values guide all clinical decisions.”

For this to truly happen, doctors’ appointments need to cover more topics than how one is feeling and what can be done. Does your doctor know your values?

If you answered no, you’re not alone. Fewer than half of people report that their physician or other health care provider asks about their goals and concerns for their health and health care.

Your doctor can discuss medical tests and treatments without knowing your life goals, but sharing your values and needs with your doctor makes discussions and decisions more personalized – and may lead to better health.

How does patient-centered care happen?

In order for your health care to center around you, your doctor needs to know your values, preferences and needs. Everyone is different. Your values and needs may also vary from one appointment to the next.

As a neurologist, when I’m working with a 76-year-old widow whose main goal is to remain independent in her home, we frame her care in that context. We weigh benefits of medications versus the complexity of adding one more drug to her crowded pill box. We discuss how a walker helps her be more independent rather than less, as she can move around her home more safely.

When a stressed college student comes to my office for a bothersome tremor, his preference is to avoid medications that he might forget to take or that might harm his school performance. This guides our discussion of the pros and cons of different options, including using medications but also doing nothing, an option that almost half of patients feel strongly should always be discussed. A year from now after graduation, we’ll revisit the conversation, as his goals and needs may be different.

In sharing their values and goals with me, these individuals enabled a health care approach that respected their needs and also responded to their life circumstances.

Shared decision-making is not just relevant when deciding whether or not to start a treatment, but also when deciding whether to undergo screening (e.g., mammography) or get testing to tease out a diagnosis. The key element of shared decision-making is incorporating your values and preferences alongside the best available evidence.

To do this, your physician should explain the medical information associated with each of the different options – the research, the anticipated benefits and how likely they are, the risks and how often complications or side effects happen, the costs, etc.

Your physician should also discuss your values and preferences as they relate to these options. For example, when partnering with a person with chronic daily headache and a high-stress job, I’ll help him or her reflect on the potential benefits of fewer headaches on work productivity but also the potential impact of the side effect of morning grogginess.

With so many options and so much uncertainty in medicine, individualized care is critical. That happens most effectively if you and your doctor are on the same page about your goals and needs.

Tools for navigating shared decision-making

There are three-step and five-step outlines for shared decision-making, which are primarily aimed at helping physicians be intentional about this process.

These models frame the steps of medical discussions slightly differently, but both emphasize that patients and health care professionals need to be engaged – it’s a partnership. Alternatives are compared, values discussed and a decision made. Reassessment is also an important part of shared decision-making, as alternatives and values can change over time.

For common decisions, different health care organizations have created decision aids to help physicians and patients talk through the scientific evidence, pros and cons, and values that are likely to impact the specific decisions to be made.

Decision aids are not designed for patients to make decisions on their own. They are created to enhance your partnership with your doctor, providing a structured way for you to talk through a decision by reviewing the evidence and your preferences.

What you can do

While busy lives can hinder introspection, it is helpful for you to know your own goals and needs. Are you focused on working two more years until retirement? Do you want to explore physical therapy or diet changes before considering medications? Are you walking your daughter down the wedding aisle in two months and want something to hide the tremor that never really bothered you before?

If you know your values and your goals for the coming months or years, it’s easier to share them with your doctor.

Shared decision-making also requires you to be an active participant. Listen to the options, the pros and cons. Ask questions. Think through how each option relates to your personal values and preferences. Take time if you need it. And then with your doctor, decide what’s best for you.